Lyon wrote:Hi Ken,notasperfectasyou wrote:I can only speculate that you've made some sort of decision to only pursue things that have made it to the trial stage. Do I have that right?
Despite the fact that the increased incidence of immune dysfunction among the "developed" populations had been an obsession of mine long before Jamie was diagnosed with MS, I'd be lying to say that we really have a pre-set game plan that we're comfortable with.
In my wife's case, she's comfortable getting her MS "news" from me because it honestly seems that MS is something she spends zero time considering on her own. Luckily, to this point the monster has allowed her to ignore it.
I suppose what drove us to the Tovaxin clinical trial was that in the months previous my wife's neuro had temporarily pulled her off Rebif due to high liver enzymes. When she was given the OK to go back on Rebif, she didn't and it was obvious that she had no intention of returning to pincushion status. She didn't complain about it when she was on Rebif but when I pressed her to get back on it she complained that it made her feel like crap all the time.
With the above in mind, she's not different than the majority of the American public in that, to her, the risk doesn't seem worth changing her lifestyle (ie..diet, ABX, needles/site reactions/flu symptoms) over a monster she caught a brief glimpse of over three years ago.
You and I know that MS won't be ignored indefinitely and it horrifies me that she's almost inevitably, eventually in for a rude awakening, but if she wants to live her life as long as possible in the bliss of intentional ignorance, more power to her.
I don't think that at this point she has the conviction that accepting life as a pincushion is certainly going to ward off disease advancement. Because she has no noticeable symptoms she has no enticement to go to the effort of ABX or diet change, etc.... considering that without symptoms and advancement she would have no way of determining benefit.
Why did she go on Tovaxin specifically? Basically because she wasn't on anything else and at that point the medical community was really hyping being on SOMETHING. Considering that MS is considered to be T cell motivated, the science behind Tovaxin seemed valid and, opportunely the Tovaxin show happened to be coming to a town near us.
In a quick proof read that seems to answer things as well as possible but if not, let me know.
This is illuminating. Thank you for sharing. you're comments inspired the imponderable thread and I'd like to know if it would be ok for you or I to make a copy of them and post them in that thread? It's exactly the kind of discussion I was hoping to have there.